PVFS/ME/CFS Watch

Friday, April 22, 2005

Chronic Fatigue Patients Show Lower Response To Placebos

April 21, 2005. Source: Center For The Advancement Of Health. Here is a copy of a report that I believe is the same one published by Reuters a few days ago. I emailed a copy of it to Simon Lawrence of the 25% ME Group because it shows what King's are up to again.

You have to wonder if King's are somehow connected to pension/health insurance companies. There's something about King's that makes one wonder why they receive so many research grants that end up somehow undermining CFS/ME.

I thought twice about posting this report. But the one preceding it, about the CFS/ME sufferer who felt suicidal and overdosed, gives a flavour of what it is like living with severe M.E., prompted me to go ahead and publish this.

If you go by what King's says in the report - the health of the man who overdosed, deteriorated because he avoided physical activity? Ridiculous. I wish someone would file a lawsuit against Kings for the damage and distress they have caused over the years to M.E. sufferers, their carers, not to mention all the thousands of fit young men struck down in the prime of life with debilitating and profoundly disabling Gulf War Syndrome.

The man who overdosed simply saw no point in carrying on. He could not bear the hopeless situation of pain and suffering. His wife understood because she lived with it day in day out. It is a very sad story. But not surprising. Imagine you are in his shoes, and there is no treatment or cure, wouldn't you be feeling like he did? I know I do sometimes. A few days ago it was my birthday. A day of mixed emotions. If you were in my shoes over the past five years, you would know what it felt like to be celebrating another year. Here is the report:

According to the new analysis by Dr. Hyong Jin Cho of King’s College London and colleagues, 19.6 percent of patients with chronic fatigue syndrome improved after receiving inactive treatments, compared with a widely accepted figure of about 30 percent for other conditions.

Because the placebo effect seems to be strongest in diseases with highly subjective symptoms, some medical professionals believed it could be as high as 50 percent among CFS patients.

The review, reported in the current issue of Psychosomatic Medicine, pooled data from 29 studies in which 1,016 people with CFS received various placebos.

CFS is a complex illness that has no known cause or cure. Myriad symptoms include severe malaise, muscle and joint pain, sleep and mood disturbances and headache. The symptoms continue for at least six months and cannot be explained by any other medical conditions. The Centers for Disease Control and Prevention estimate that as many as 500,000 Americans may have CFS or related conditions.

With so many mysteries surrounding CFS, a great deal of controversy exists among both doctors and patients as to whether its origins are primarily psychological or physiological. Current evidence suggests that emotional or social stresses such as bereavement or problems at work, combined with other triggers such as common viral infections, contribute to the disorder. Additional factors, such as avoidance of physical activity, may cause the symptoms to become chronic, says Cho.

The authors propose several possible explanations for the surprisingly low placebo response revealed in the analysis. Perhaps patients have low expectations due to the reality that CFS is very difficult to treat and often persists for many years. Alternatively, disconnects between how patients and doctors view the illness “may impede development of a collaborative therapeutic relationship,” reviewers suggest.

The study also showed that the placebo response is 24 percent for medical interventions but only 14 percent for psychiatric/psychological treatments. The authors say the reason may be that many CFS sufferers seen in specialist settings or self-help groups “have a firm conviction that their illness is of physical origin” and thus would have little faith in psychiatric/psychological treatments. This finding supports the idea that the placebo response is greatly influenced by patients’ expectations of improvement.

According to the review, behavioral therapy and graded exercise therapy have benefits, and if patients were more aware of them, says Cho, they might be “more open, more optimistic, and more collaborative with the professionals, and the overall outcome of the treatments could be enhanced.”

Dr. Lucinda Bateman, an internist who specializes in CFS and fibromyalgia and serves on the board of the American Association for Chronic Fatigue Syndrome, has worked with about 500 CFS patients over the past 15 years.

“In my clinical experience, I have found that CFS is among the most difficult conditions to improve at all, with either physical or psychological interventions.” This is true in part, she says, because there is a great deal of variation among patients diagnosed with CFS, and Bateman believes that ultimately CFS may be found to involve more than one disease.

In the absence of a cure, Bateman has found that the most effective treatment for CFS combines improving symptoms with medication, helping patients retain physical conditioning when possible and using psychological and psychiatric interventions to help patients adapt to living with chronic illness.

She doesn’t discount the placebo effect, however. “When you say to people, ‘I believe you, I will help you manage your symptoms, I will advocate for you,’ that hope and feeling of control over their disease could be considered placebo effect, but it’s an important part of delivering medical care.”

Overdose Man's Wife 'Thought He Was Past Help'

A woman who watched her reclusive husband die of a drugs overdose told police she did not call for help because he had turned blue and she thought it was too late, a court heard.

Jill Anderson, 49, had spent the previous weekend begging her husband Paul, 43, to stay alive after she had intervened in numerous previous suicide attempts, Leeds Crown Court was told.

￼Mr Anderson, who was suffering from chronic fatigue syndrome, ME, was weak, vulnerable and in constant pain when he took an overdose of morphine at their home at Westowe Cottage, Galphay, near Ripon, North Yorkshire, on July 17, 2003, and died the next day.

The jury of eight men and four women heard Anderson describe her husband’s decline from that of a translator who spoke 10 languages and ran his own business to someone who was bedridden and could not comb his hair or even make himself a cup of tea.

“That was devastating for him,” she said.

Mr Anderson had tried to commit suicide on numerous occasions, many of which had not been reported to the authorities.

Police interviews with Anderson were read to the court by Detective Constable John Bosomworth, of North Yorkshire Police, and David Perry, prosecuting.

In them, Anderson said that on the evening of July 17 her husband told her he had taken too much, but she was in two minds as to whether to believe him because he had said this before, several times.

She said that on two previous occasions, when she had called for help, he had just “slept it off” at Harrogate District Hospital.

She said: “I didn’t think it was serious because the others hadn’t been.

“He went into a deep sleep and I just thought it was such a relief to see him sleeping. I thought it was so nice because he had so many problems sleeping.”

She said Mr Anderson had woken up around 2am and had asked for his radio earpiece, so she had thought he would just sleep it off.

But when she saw that he had turned blue at between 5am and 6am, she told police she had seen a story in a newspaper about it and “knew there was no recovery”.

She said: “I saw he was still breathing so I stayed with him. His last breath was about 9am in the morning.”

The court heard she had not called the doctor until 11am.

She told police: “He was dead and I didn’t want to do anything. I had lost the thing I loved most and my best friend.

“I wanted some time on my own. I knew someone would come and then put him in a body bag and I just wanted some time on my own with him.

“He was dead. I didn’t care any more.”

She told police that his final few days had been “bad” and they had spent the whole of the previous weekend “crying together”.

“I was begging him to stay alive. We both believed he would always make a recovery,” she said.

“I didn’t want him to die, he didn’t want to die, but the pain was too much.”

She said she had been emotionally and physically exhausted after looking after him.

“I had spent all weekend trying to save his life and I was exhausted.”

She told police she did everything for him, which was devastating for him, and that: “I was on a 24-hour suicide watch really.”

She told police that, six weeks earlier, she had spent an afternoon begging her husband to stay alive, repeatedly persuading him to get out of a car which he had attached a hosepipe to in an attempt to kill himself.

The court heard a suicide note had been left at the side of the bed, but she told police there had been a “whole series” of them during recent months, and each time she had convinced him to stay alive.

“I was binning suicide notes quite regularly,” she said.

The court also heard that on the morning Mr Anderson took the overdose, his wife had helped him fill in a form to claim disability allowance and to make a list of his illnesses.

“I think he started realising the level of disease that he had. It was there in front of him in black and white. That’s what did it for him.

“He was permanently bedridden and in unrelenting pain.”

Anderson denies manslaughter.

http://news.scotsman.com/latest.cfm?id=4439881- - -

'It was not too late'

Accused woman could have saved dying husband at the 11th hour, says expert

Leeds news report by Rod Hopkinson april 22, 2005:

A woman who sat with her husband as he died from a drug overdose could have saved him at the 11th hour, a court heard. Jill Anderson watched for several hours as her husband, Paul, 43, slipped into unconsciousness and turned blue before he died, it was alleged.

Mr Anderson suffered chronic fatigue syndrome and severe pain which had left him bedridden and housebound for most of his eight-year marriage, Leeds Crown Court has heard.

His 49-year-old wife has pleaded not guilty to the manslaughter of her husband in July, 2003, at their cottage home in Galphay, near Ripon.

On the second day of the trial the jury heard evidence from Mr Anderson's family doctor, Angus Livingstone.

The GP, questioned by Paul Worsley QC, defending, said Mr Anderson was living in the hope of something that would, at least, partially ease his constant pain.

Dr Livingstone said he went to the family home on the day Mr Anderson died.

He said: "I think (Mrs Anderson] said she didn't do anything then because she felt he had suffered enough. That is my recollection."

Prosecutor David Perry has alleged that if the defendant had dialled the emergency services for medical aid, her husband's life was likely to have been saved after he took an overdose of morphine.

Mr Perry said her failure to summon help was a gross breach of her duty.

Mr Anderson took an overdose at about 6.30 on the night before he died and by 5am the next day he had turned blue. He died between 9am and 9.30am.

Eminent medical expert Professor Alexander Forrest told the court if medical assistance had been summoned immediately he would have expected Mr Anderson to have had a "well over" 90 per cent chance of survival.

Prof Forrest was then asked by Mr Perry what would have been the likely outcome if Mr Anderson had been admitted into hospital minutes before he stopped breathing.

He replied: "I believe better than 50 per cent – but his survival could not be guaranteed."

Saturday, April 02, 2005

Acute versus chronic mononucleosis - By Peter H. Gott, M.D.

￼Article posted at Monterey Herald online on Apr. 01, 2005

Dear Dr. Gott: I am 77 and was recently diagnosed with Epstein-Barr infection and immune deficiency, based on a blood test by my ear-nose-and-throat doctor. I had mononucleosis as a teenager and was very ill. Now I run a low-grade fever and feel tired. I have had one injection of gamma globulin without noticeable effect.

My primary care physician disagrees with the otolaryngologist, and says that there is a controversy about EBV chronic illness. Can you help me sort things out?

Dear Reader: Mononucleosis, an infectious disease that is common in adolescence, is caused by the Epstein-Barr virus. It is marked by sore throat, enlarged lymph glands and overwhelming fatigue. In the process of combating the disease, the body manufactures anti-EBV proteins that can be measured in the blood. These are called IgM proteins.

As the infection resolves (as it almost always does without therapy), the immune system "switches gears" and produces another group of proteins, called IgG, that may be present in the blood for years thereafter. This does not indicate the presence of ongoing infection or chronic EBV infection, a medical entity that is in question.

If your ENT doctor obtained an EBV panel, the test would have shown one of four possibilities:

1) Negative IgM and IgG levels. This would indicate that you never had (and don't now have) mononucleosis, or that you had it years ago and it was cured.

2) Positive IgM and negative IgG. This is consistent with acute mono, a relatively unlikely possibility given your age.

3) Negative IgM and positive IgG. This suggests that you had mono in the past.

4) Positive IgM and positive IgG. This combination could reflect a second, acute bout of mono, or simply an overactive immune system.

A decade or two ago, "chronic" EBV infection was considered to be a common cause of chronic fatigue syndrome, and was treated with gamma globulin injections to strengthen the immune system. This practice is no longer recommended because there is substantial doubt about whether chronic EBV is a disease at all.

Therefore, I side with your family physician and encourage you to have further testing performed to discover any hidden infections that could be the cause of your fever and fatigue. I would also recommend that you discontinue the gamma globulin injections; they are expensive, and not without risk, and probably aren't going to help you in the lung run.

Because I have lightly hit on blood disorders, I am sending you a copy of my Health Report "Blood: Donations and Disorders." Other readers who would like a copy should send a long, self-addressed, stamped envelope and $2 to Newsletter, P.O. Box 167, Wickliffe, OH 44092-0167. Be sure to mention the title. [End of article]

Lyme Disease

Friday, April 1, 2005 online report at North Shore by Julie Nagazina/ Correspondent:

For most people, ticks are just an annoying part of life in the North Shore. For some residents, however, they have become the cause of daily nightmares, believing that Lyme disease and other tick-borne illnesses have left them chronically ill and debilitated. They also insist they became much sicker than they should have because medical tests and local physicians failed to make accurate diagnoses.

To make matters worse, they say that even after they were diagnosed, it was difficult for them to find a local doctor to prescribe the long-term antibiotic therapy that they believed was necessary to relieve their symptoms. And when they finally succeeded in finding a source for medication, their health insurance would not cover the costs.

After hearing enough such complaints, state Rep. Brad Hill felt compelled to respond by hosting a an informational forum on Lyme and other tick-borne diseases last week at Ipswich Town Hall.

At that forum, Dr. Alfred DeMaria Jr., director of the Bureau of Communicable Disease Control for the Massachusetts Department of Health, explained that Lyme disease is a bacterial illness that is typically transmitted to humans by deer tick bites.

DeMaria emphasized prevention. He suggested putting buffer zones of gravel or mulch between woods and yards, regularly checking for ticks on one's body, using repellents and wearing long sleeves and pants.

According to DeMaria, not everyone gets the classic bull's-eye rash and warned people to take seriously any rashes associated with aches and fever.

He also mentioned other diseases that can be spread by tick bites. They have exotic and intimidating names likeBabesiosis andErlichiosis,and are caused by microscopic organisms or bacteria. They exacerbate the symptoms of Lyme, as well as making diagnosis and treatment more complicated.

"We are trying to raise awareness statewide," said DeMaria, who recommended starting a North Shore Lyme disease task force.

More of the same

The information conveyed by DeMaria was helpful, but most of it was not news to most audience members. They, or members of their families, had suffered from Lyme disease but had not found the help they needed from the local medical community.

When forced to look elsewhere for treatment, they turned to Web sites, word of mouth, advice from support group members, and out-of-state physicians and laboratories. Most of the forum was devoted to letting such people share their often heart-breaking experiences.

Susan Mercurio, of Hamilton, told a frightening, but not unusual story. Five years ago, neurologists told her she had multiple sclerosis. Treatment with steroids resulted in loss of vision. It wasn't until her third test, at a new lab, that she was diagnosed with Lyme disease.

After more than a year of treatment with intravenous antibiotics, Mercurio's eyesight has returned to the point where she can drive again. However, in order for her to receive the treatment she believes she needs, she says she must go to New York and pay out of pocket.

The need for better diagnostic testing was echoed by several attendees at the forum. Some asserted that high-quality testing is available, but is not being used by local physicians.

Kay Lyon, of Wenham, described her daughter as being "close to death," even after treatment by 16 different physicians. Lyon made the diagnosis of Lyme disease herself and, in hope of helping others avoid what her family went through, maintains a Web site - www.lymesite.com - on the topic.

Speakers at the forum advocated using clinical symptoms to diagnose Lyme. Unfortunately, the Lyme bacteria can take up residence in many different parts of the body, causing a terrifying array of symptoms.

This plethora of possible symptoms increases the likelihood of misdiagnosis. Literature brought to the forum described Lyme disease being mistaken for Lou Gehrig's disease, Parkinson's disease, multiple sclerosis, chronic fatigue syndrome, schizophrenia and many other problems.

Wenham's Ginny Stephenson spoke of the need for "physicians' forums, not public forums."

"The range of symptoms is so broad," she added, "to know Lyme is to know medicine."

Wrong calls

Misdiagnosis can worsen the effects of Lyme disease. James Balesteri, of Rowley, a chronic Lyme sufferer, described how steroids given to treat other diseases can begin an "amazingly destructive process."

According to Balesteri, "steroids enter the bloodstream and disable the killer cells that stop the pathogens that move through the body."

Some of the most disturbing information at the forum was presented by Michele Holland, of Ipswich. Three years ago, when her son was 5 years old, he became afflicted with violent motor ticks and twitches.

Doctors told Holland her son's condition would probably pass with the onset of puberty and that she should just "live with it."

Holland learned of other cases nearby where people shared her son's symptoms. Children's Hospital carried out a "cluster study" in the area of her neighborhood, identifying 13 children and nine adults who'd suffered from the twitches.

Holland's son's symptoms began to improve after he received antibiotics for another ailment, leading her to conclude that Lyme disease was the cause of her son's medical problems.

"After all," said Holland, "the only thing [the subjects of the study] have in common is the mosquitoes, the ticks and the Ipswich River."

Reports like the Ipswich cluster study touch a nerve because children are affected. The involvement of children makes Hamilton's Paula Gesmundo's story especially sad. All five of Gesmundo's children are infected with Lyme and other tick-borne diseases. She believes she passed the illnesses on to her children during pregnancy.

Before treatment, Gesmundo's family suffered from migraines, rashes, joint aches, fevers, vision loss and problems with schoolwork. She now spends "thousands of dollars" each month on antibiotics and other medications.

Gesmundo speculated that more aggressive treatment of tick-borne diseases might reduce the number of children who need Special Education services.

New York physician Leo Shea described how he visits patients in Massachusetts because there are no qualified clinical "Lyme-literate" neuro-psychologists here. He suggested putting Lyme disease warnings on hunting and fishing licenses, including more prevention information on state Web sites, and making a Lyme disease course a mandatory part of continuing medical education.

Shea asserted "The significance of tick-borne diseases is undervalued by a factor of 10," and that such diseases are "the fastest growing in the U.S."

State Rep. Brad Hill assured his constituents that he plans to get more state officials involved and let them hear peoples' stories. He made a vow to forum attendees to "start a dialogue that will not end today."